Hannah's endocrinologist appointment was very long but very informative. I really like this doctor, he takes the time to explain everything, answered all of my questions (even the ones I found online) and took as much time as was needed.
He thinks the scan is off on it's readings. It's complicated, but the radiologist has to draw around Hannah's bones to set up the computer for the bone density calculation. If they don't outline it exactly, or make the outline exactly like the last time, the results will be skewed. We think that is what happened. It's very clear on a part of the scan that it wasn't outlined as precisely as last time, and the computer therefore measured some blank areas. Of course, that would register as zero bone density, affecting the outcome of the reading.
He also told us that the scan we had done had a pediatric scale for the spine, but not for the hip. So, the hip reading is really irrelevant because they are comparing Hannah's bone density to that of a young adult. He does believe that the results probably show a similar reading to the last scale, or possibly down just a hair. He wants us to have it redone at a different hospital that has better pediatric readings for both hip and spine.
Hannah's blood work did show low Vitamin D and regular (even on the high end) Vitamin C levels. Her other blood results also indicated that she does not have any thyroid issues, or other endocrine issues which would prevent absorption or creation of those vitamins. So, we are now supplementing Hannah's diet with a Vitamin C/Vitamin D combination vitamin. He still wanted to supplement with Vitamin C because Hannah isn't taking in enough calcium each day.
Also, Hannah's blood work showed that her pituitary gland has been damaged by the radiation she had and is not producing enough growth hormone. This is why she is only growing at half the normal rate of a child her age and most of the growth is coming from her legs and not her spine (which also received full radiation.) It's really obvious if you see her in person. Her torso area is filling out, but not getting any longer so she is starting to look more filled out than before. She really doesn't like this and mentions it to me once in a while. The doctor wants to start giving her growth hormone after she reaches the 2 year mark-2 years out from end of chemo, which will be December 2009. This is the point they feel more comfortable giving her the hormone without spurring the growth of the tumor again. Some doctors believe it will cause a recurrence, and others say there is no evidence. Sure wish we didn't have to do it, but I know they will monitor her closely. Unfortunately, this means daily injections with a device somewhat like an epi-pen. She still isn't thrilled, but we have some time to work up to it.
So there's the scoop. I told the doctor I thought endocrinology is very complicated. It's all tied together-the IGF, PTH, TSH, HGB A1C, Free T4, T-uptake, activated and non-activated calcium, I-25D, 25D, osteoclasts, parathyroid, thyroid, phosphorus, CA2t, EGFR, hyperthyroidism, hypothyroidism, hyperparathyroidism, pseudohypoparathyroid, non-pth hypercalcemia, ceruloplasmin, insulin like GF bind prot 3, bmd, and how all of these things interact with the liver, gut, blood, colon, bones, etc. etc. Want me to go on?
The doctor also wants Hannah to be seen by an orthopedist for her foot pain. He thinks she is at high risk for stress fractures, and she may have some in her feet already. Today she hurt her foot again while she and Colby were outside playing (oh, I mean helping us open the pool!) She said this time is hurts worse than usual. She won't walk on it at all. We'll see what tomorrow brings.
Next week I have to set up an appointment with her orthopedist and wait for the doctor to call about where we should go for the pediatric dexa scan. On a positive note, the last few days have brought a few less stomach aches (crossing my fingers that the tide is turning.)
Off to do more luminaries with the girls, it's fun!
♥
Saturday, May 23, 2009
Thursday, May 21, 2009
Hannah had her dexa (bone density) scan on Tuesday. I knew from the technician's face it wasn't good. They measure bone density at two different points in the body, the spine and the hip. From what I understand, there are 2 different scales by which they can determine your bone density, one for adults and one for children. The hospital we were at only has the pediatric set up for the spine. Hannah's reading showed a 22% DECREASE from her first scan in July. If that is really accurate, I don't even know how she is walking around without constantly breaking something. After the last scan, she was already diagnosed with osteoporosis and a high risk for fractures. With another 22% decrease, does she have any bone left? It was obvious from the pictures that there was a big change from the last scan, and not in a good way.
♥
Sunday, May 17th, 2009
A quick run down on our weekend-
We have started the luminaries! To date, we have 107 luminaries. THANK YOU so much to everyone who has purchased one to support Hannah, and honor your loved ones. We are so appreciative of you taking the time, and donating the money to support us. We have 13 days left, but there is still time. We would love to include you in our group of luminaries! I have included the information below, if you would still like to buy a luminary. Here they are, starting again....
Hannah came home from school on Friday at noon. She said she was very tired and her stomach really hurt. I picked her up and she slept until 5pm, a five hour power nap. She woke up feeling a bit better, still not eating a whole lot. Her oncologist has increased her medicine once again. He said that sometimes when you have decreased the medicine, you can't just go back to the original dose, you have to increase it, then back off a while later. I hope that is true. I hate having to increase her medicine. It doesn't seem to have kicked in yet. She is trying to go to sleep now, and she keeps calling me in, saying her legs are hurting. She is moving them back and forth and crying, just like old times in rehab. We thought then it was anxiety, and I think now it's anxiety. I don't know over what...life.
Life for her isn't always easy, actually it's mostly difficult. Today she played lacrosse today, she hurt her foot, and now she is limping profoundly again. She cries out most of the time when she steps down on it. She is just hobbling around. She has a dexa scan on Tuesday, which measures her bone density. I am hoping while we are there, they can either scan or xray her foot to be sure there are no breaks. With her low bone density, it's a possibility that she has a hairline fracture.
This weekend and last we have been working on our Relay team tree. I had this vision when we first started this to have a "Tree of Hope." A paper mache tree with golden ribbons signifying all of the children (and adults) with cancer. It was ambitious, but together we made it happen. Here are some pictures of the fun we had along the way. It's really coming together, I can't wait to share it with all of you. NOW-if it rains, we're in big trouble. We have many friends we have met along this long cancer road. We are going to honor them on our tree. If you are reading this and you know anyone else you would like to include on our tree, please email me. Child or adult, we are including everyone on our tree of hope. We are going to sell ribbons at the relay to help raise money for our team to be donated. If you are going to join us, please stop by our tent and check out the masterpiece!
♥
Help us shed light on the fight…
Here is what we need if you are purchasing a bag:
Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. You can also pay via paypal, email address is kprokop@optonline.net
Thursday, May 14th, 2009
Neuroblastoma, they just said NEUROBLASTOMA out loud on Grey's Anatomy. Although most people don't know what that is-CHILDHOOD CANCER-there are a lot of us that do. Before Hannah was diagnosed, I watched Grey's religiously. After she had her surgery, and she was still critical in the Peds ICU, I turned it on in the hospital room. It took me about 30 seconds to realize that there was no way I could watch it anymore. To see all those people in the hospital, bleeding, dying, it was way too much for me. I didn't watch after that. Now that Hannah is out of treatment, I started watching it again. She came in one night when it was on and said "Eew, how could anyone watch that?" Sometimes it still gets to me, especially with their story line now about cancer.
Last week during his tv special, Michael J. Fox said "from every bad thing this disease has brought into my life, it has brought good twice fold." I'm still trying to wrap my arms around that one, but I do see the truth in it. We have had so many good things come into our lives, so many good people. Do you know that every week people still drop off cans at our house for Hannah's Cans for Cancer? Small amounts, HUGE amounts, everything counts. Do you know that the Kellys spend their time washing out EVERY can so that Hannah wouldn't have to touch any germs from them? Unbelievable.
Tonight we see a very large ad in our local newspaper for Hannah's Cans for Cancer. Again, good things and great people that have come into our lives. Our friends, the McKillops own a beverage center here. Some time ago we began taking our cans there for recycling at their request. They have been so generous to us. They set up a program so that people who brought in their cans could donate to Cans for Cancer. So today we open the paper and see a very large advertisement announcing Hannah's Cans for Cancer and a raffle they are holding. Their ad read that usually at this of year they advertise specials for the season, but this time, they were announcing something more important-Hannah's Cans for Cancer. So if you are local, please go in and check it out and support them..Riverhead Beverage Center in Riverhead. WOW...I mean WOW!
And these are just a few examples. I could go on and on. For all of the bad that we have experienced through Hannah's cancer, we have experienced so much good.
And Hannah...not so good right now. She was home today from school again. I have an email in to her oncologist now to see if he wants to change something, hoping he has an idea. I wish we hadn't changed her medicine, she had been doing so well. Here she is today... she felt terrible. This morning she wouldn't eat again and said her stomach hurt, and her throat really hurt. She went back to bed and slept until 2pm. She woke up and still wouldn't eat, or really drink. Finally around 5pm she ate a bit. She said her stomach no longer hurt, but her throat did and she just felt bad. She is congested and miserable. She did pep up a bit tonight, we'll have to see what tomorrow brings.
♥
Sunday, May 10th, 2009
Happy Mother's Day everyone. The rain has finally ended here in New York, and we are enjoying some sunshine this weekend. We started off our day here with 2 lacrosse games, one for each. We were done by noon, then I spent the rest of the day in the garden. Hannah planted with me (her own garden) and Colby painted a new agility piece for Riley. Our whole garden is planted, and right now it looks good (no weeds at all!) Hannah made me pare down the amount of tomato plants this year so that she could have more room. It's a good thing, because with all of the things she planted, there was NO more room for anything else. She planted big pumpkins, little pumpkins, watermelon, potatoes, sweet potatoes, carrots and a ton of flowers. She does great with planting, but not so great with weeding, so I'll have my hands full soon.
Hi, my name is Hannah. I am a cancer survivor. When the doctor told me I had a brain tumor I was scared because there was a chance I could die.
♥
Help us shed light on the fight…Here is what we need if you are purchasing a bag:
Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. You can also pay via paypal, email address is kprokop@optonline.net
Sunday, May 3, 2009
I just finished updating our luminary list for our 2009 Relay and WOW, we have 79 total! It took me a while to enter all of the bags from Grandma K, she got orders for 35 bags from her friends in Arizona. Incredible! Thanks so much Grandma. There is still lots of time, so please let us know if you would still like to order. I will put the order information at the bottom of this post.
The girls both had their piano recital today and did great. It's wonderful to be able to hear all of the kids and just relish in the beauty of the music they make. I do have a video, I'll post it here later. Here is a picture of Hannah with the brownies we made to take with us. We put musical notes on the brownies! ♥
Help us shed light on the fight…Here is what we need if you are purchasing a bag:
Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. You can also pay via paypal, email address is kprokop@optonline.net
